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Rang the bell AGAIN!

hwt's picture
hwt
Posts: 1967
Joined: Jun 2012

Finished the last of 5 SBRT tx yesterday and am back home with lots of optimism and hope. I feel so blessed to have had the opportunity to go to Mayo. I had the major anxiety attack last week with the simulation MRI with mask that my brother, sister-in-law and 2 sisters all went up with me. I did so good with the first tx that my brother and sister-in-law came back to STL in the afternoon and then my brother flew back up to get us yesterday (about a 60-70 minute flight).  We were told that the carotid was not a concern during the actual tx and late in the week, I might get tired then after I got home, I might have a mild sore throat but otherwise, they didn't expect much in the way of side effects.  This was all in comparison to the old guy (72) in STL that laid the ground work for a permanent trach, permanent feeding tube, horrific sore throat  and wanted to "give this thing a shot". Mayo said less than 1% chance of brain damage resulting from tx. No more than 5-10% chance of carotid hemorage or blockage, down the road, but chance does exist. 80% success rate with reducing or eliminating. I will have a PET in 3 months. The carotid cavity will fill with something, fluid, scar tissue, etc. This area can not be treated again but if there is an isolated recurrance in another area, I could get this tx again. Initially, chemo came up for discussion but I think they are keeping that option in their back pocket for now. I admired Mayo for calling MDAnderson to discuss proton therapy for me vs. SBRT. I felt both places truly had my best interest at heart. Mayo has proton therapy but it is not up & running yet and won't be this year. I chose SBRT because they couldn't site any advantage of one over the other, one is 5 days and one is 7 weeks. Proton therapy has the advantage of stopping at the tumor where with SBRT, it drops off quickly with little residual damage. Proton therapy does not have any long term results avaialble yet. The SBRT is like cyberknife, a bit more advanced technology but the one Mayo uses. My sisters and I even fit in a couple of movies, shopping and sightseeing.  This was nothing like the 7 weeks of traditional radiation I had. In comparison, it was a walk in the park. I intend to stay positive and enjoy the next 3 months, not spend it worrying about the unknown, hopefully, I will never have to cross that bridge. 

Happy Labor Day holiday to everyone and thanks for all the support to cross this hurdle!

Candi

 

phrannie51's picture
phrannie51
Posts: 3784
Joined: Mar 2012

WOW!!!!!  Not to mention going to movies, shopping and sightseeing all while getting radiation....the SBRT sounds like a machine that was made in heaven!  How long was each treatment?  I guess my curiosity stems from 1) not getting my scan back yet, and 2) that there is a machine that can zap cancer, but doesn't lay us out flat for months on end. 

I'm delighted to hear you so upbeat and positive....I'm letting your aura surround me.....I'm doing a double duty on you never EVER having to cross that bridge again.

p

hwt's picture
hwt
Posts: 1967
Joined: Jun 2012

They scheduled 40 minutes but that included changing and setting up. I don't think I was on that table any more than 30 minutes, if that. They said they could only have 1mm variance and I could not move more than 1mm. Turns out, the titanium in my jaw was a benefit in gettting me lined up each day. As I understand it, the best use is on isolated tumors of a certain size.  With this being so easy, I just had to ask if it would have been possible to use on the original tumor and I was told absolutely not because it was such a large area. It gives peace of mind to know options and advancements like this are out there. I'll be happy for the day when nobody has to go through what we did with the traditional radiation. 

KTeacher
Posts: 951
Joined: Jan 2011

So glad to hear your report.  Hopefully my treatment will be moving along soon.  Stanford called me for an MRI on Tuesday, I also see one more doctor that day.  My family will be so glad to hear your report also.  Nice to know this shouldn't kick me on my butt!

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

WTG bell ringer...

debbiejeanne's picture
debbiejeanne
Posts: 2507
Joined: Jan 2010

candi, i'm sooooo happy 4 u!  u got thru treatment and got to spend quality time w/family.  that's what its all about!  enjoy the weekend and keep us posted.

dj

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Glad to hear the procedure went well and without side effects!  And no weeks and weeks of recovery either!

Positive thoughts and prayers

"T"

 

sin9775's picture
sin9775
Posts: 198
Joined: May 2013

Contratulations.  Your post was wonderful to read.  The best of luck to you!

~Shawn~

 

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

is all I can say !! I am so happy for you ! That is the best post I think I've seen on here . That Machine sounds like a dream , wow hardly any side effects ! I'm glad you posted about if you could have had the SBRT first becausee that is the first question that came to my mind . Yes enjoy the next 3 months , you are going to be fine !!!

TracyLynn72's picture
TracyLynn72
Posts: 729
Joined: May 2013

reading this!  SO glad that week is over and you did so great!!  That machine does sound wonderful!  

CivilMatt's picture
CivilMatt
Posts: 3012
Joined: May 2012

Candi,

I rang my bell for you!

Listening to you I feel like I have a front seat to the latest H&N treatment.  To maintain a sense of normalcy and get treatment too, it is great.

Heal on,

Matt

katenorwood
Posts: 1853
Joined: May 2012

Candi,

Wonderful report !  It is absolutely amazing how the bigger clinics work in unison to figure out the best tx's.  You are one amazing lady !  And reminds me that we are our best advocates, and keep searching for the proper tx's.  Hugs sent !  Katie

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Candi

CONGRATS on being a two-timer !! (bell ringer that is).

Sounds like you just sailed through this round of treatment.

Glad to hear some good news from you for a change. 

Stay strong and keep up the good reports.

hwt's picture
hwt
Posts: 1967
Joined: Jun 2012

I really appreciate everyone's support! God bless each and every one of you.

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

Wonderful news Candi..positive attitude

 

Linda

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Candi,

Way to go!! Your news made my weekend!  Keep it up

Greg

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Candi,

So glad to hear you rang that Bell again,  Praying that your 3 month pet scan brings nothing but good news.  Gosh,  you are so strong and inspiring... you Jane been through so much.  Keep fighting! 

jim and i's picture
jim and i
Posts: 1654
Joined: May 2011

Praise God for giving them the knowledge to invent better treatments for this horrible cancer and for doctors willing to work together. May God continue to bless you with positive results and a NED.

Debbie

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

Candi, awesome news. Stay strong and enjoy the ride.

Best

Mike

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